AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Wednesday, 30 October 2013

AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Wednesday, 30 October 2013

NATIONAL

OPINION: Time has come to address the challenges of long-term care. The Hill (10/29) by Sens. Bill Nelson (D-Fla.) and Tammy Baldwin (D-Wis.)

As Congress embarks on a new venture to create a bipartisan budget that would strengthen the economic security of families and reduce the deficit without shortchanging our future, it’s our hope that both parties will also work together to find viable ways to help families pay for long-term care.

With the aging of the baby boomers, our country finds itself in the midst of one of the most dramatic demographic shifts in our history. And, as the aging population grows, so too will the long-term-care needs of many in our society.

Providing assistance to family members who can no longer care for themselves can be taxing for all involved.

In fact, the Senate Special Committee on Aging held a hearing last month to examine a myriad of challenges facing seniors today, and found many were unprepared.

So, later this year, we’re going to hold another hearing to see what we can do to help. Some of the things we’re going to look at include the possibility of expanding Medicare to cover long-term care, and other various ways to possibly make private long-term care coverage more affordable for those who need it.

Currently, about 12 million Americans have long-term-care needs — a number that’s rising rapidly. While most receive care from family and friends, an increasing number depend on costly in-home care or end up in assisted living facilities or nursing homes, where the median annual costs range from $40,000 to $80,000, respectively.

Most middle-class families in this country simply can’t afford the expense of providing long-term care for a loved one. And there are few viable options available to help them pay for the services they would need. Medicare and most traditional health insurance plans don’t cover long-term-care expenses. And while private long-term-care insurance is available, most people don’t have it because they see long-term care as something they’ll never need.

In fact, according to a recent study from the SCAN Foundation, most Americans have done little or nothing to prepare for their future long-term-care needs. This is despite research that shows that 70 percent of people 65 or older will eventually need some form of assistance.

Clearly, our current system of providing long-term care is unsustainable. And, that’s why we shouldn’t wait much longer to address it.
Nelson is the senior senator from Florida, serving since 2001. Baldwin is the junior senator from Wisconsin, in her first year. Nelson is the chairman and Baldwin a member of the Senate Special Committee on Aging.

~~~

STATE/LOCAL

At Institutions, Names Replacing Numbers. Disability Scoop (10/29) by Jennifer Brooks

The state of Minnesota promised to take care of a little boy named Eugene.

It let him down. First in life, and then again in death.

Eugene Joseph Gaffke died of heat prostration on a hot summer day in 1941, three-and-a-half years after he was taken from his family and incarcerated at what was then known as the State School for the Feeble-Minded in Faribault.

The only memorial to Eugene’s short life was a concrete plug in a Faribault cemetery, stamped with his number — 551. On his death certificate, the child’s occupation is listed as “inmate.”

Now Minnesota is doing what it can to make amends.

Between 1866 and 1997, more than 13,000 Minnesotans died in the state’s 11 mental hospitals and were buried in graves marked only with a number — if they were marked at all. As the institutions closed, the cemeteries with their sad rows of numbered graves remained in Faribault, Hastings, Rochester, St. Peter, Moose Lake, Willmar, Brainerd, Sauk Centre, Fergus Falls, Cambridge and Ah-Gwah-Ching.

“It wasn’t right. They should have been remembering us as people, not by the numbers,” said Larry Lubbers of Inver Grove Heights, who lived at Faribault from the time he was 10 until age 25.

Lubbers’ years at Faribault were deeply unhappy, filled with abuse and neglect. He was not allowed to go to school. On some days, his arms would be held down and he would not be allowed to feed himself.

“I didn’t get treated nice,” he said. “It was not a very good place.”

Not once does Lubbers remember anyone explaining why a 10-year-old had to be locked away.

Names behind the numbers

People could be institutionalized for almost any reason. Some struggled with mental illness, or a physical disability or substance abuse. Some had epilepsy, or were children with Down syndrome, or women suffering from postpartum depression. Orphaned children or pregnant mothers could be dropped off and remain there for the rest of their lives.

Today Lubbers works with the nonprofit group Remembering With Dignity, which is halfway through the long process of replacing all those numbered graves with proper headstones.

To date, Remembering With Dignity has placed 7,139 new headstones and is in the process of installing 750 more at old institutional cemeteries in Rochester, Faribault and Fergus Falls. Another 5,111 graves have yet to be restored.

Finding a name for those graves, and learning the stories behind those names, is Halle O’Falvey, who runs the Remembering with Dignity program.

Taped to her computer is a photo of Mary Grabarkewitz Kovar, who died at the Rochester State Hospital in 1896 — not long after her ex-husband had her declared insane and committed so he could take 180 acres of farmland she had inherited. The first time O’Falvey saw the photo, and heard the story, she cried. In her files is a letter from Kovar’s great-granddaughter, who calls her “the angel who found Mary’s grave.” Great-grandma Kovar is now buried under her own name.

“It’s really sad, sad stuff,” said O’Falvey, who is researching the histories of two sisters who lived and died together in a state institution. She has found many similar cases of siblings institutionalized because their parents died or fell into poverty or could not control their children’s behavior. “They were failed by society,” O’Falvey said.

She leavens the sorrowful nature of her research by working closely with volunteers like Lubbers and Manny Steinman of Minneapolis. Steinman was institutionalized at Faribault from the time he was 2 until age 10.

“We’d rather have names, instead of numbers,” Steinman said. “That’s a decent way of recognizing someone. Replace those numbers. That’s dignity.”

Every few years, O’Falvey goes back to the Minnesota Legislature to ask for more money to pay for more grave markers. Since 1996, no matter which party was in charge, bipartisan majorities of the Legislature have allocated between $125,000 and $300,000 every biennium to continue the work. Lawmakers also issued a formal apology in 2010 for the state’s past treatment of people with mental and developmental disabilities.

In the coming legislative session, Remembering with Dignity will request another $1 million to pay for thousands more headstones. By 2018, they estimate, only a thousand or so of the numbered graves will remain at the old institutional cemeteries.

One of the new granite headstones bears the name of Eugene Gaffke, who came into the world on Christmas Eve 1929 and left it on July 29, 1941.

Eugene was a sweet, smiling child, born with severe developmental disabilities. By the time he was 8, he was almost as tall as his diminutive mother but was unable to talk or walk. His overwhelmed parents, who had five other children at home at the time, allowed the state to step in and take Eugene to Faribault.

Seventy years later, one of his sisters still cried describing the day her big brother was taken to that “terrible place.” The day Eugene died, his mother was in labor with her seventh child.

“I know it would have meant a lot to my grandmother,” Karena Morris, Eugene’s great-grandniece, said of the new headstone. The Gaffke family moved out of Minnesota not long after his death. Surviving siblings were horrified to learn their brother had been buried under a number.

Eugene’s story haunts Morris, whose own daughter has serious disabilities.

‘His life … had meaning’

“When I think about Eugene’s short life, filled with so much suffering, I am even more grateful to be her caregiver. She is a blessing and a joy to me,” Morris wrote in a letter to Remembering With Dignity a few years ago, when she was trying to secure a proper headstone for Eugene’s grave. “She is also right now exactly the same age Eugene was when he died, probably scared, confused, suffering and alone. I want to make sure his grave gets a headstone so that it will be known that he was never forgotten and that his life was important and had meaning.”

Around the state, there are annual ceremonies in the graveyards of the old hospitals. Each one echoes that message: You are not forgotten, your life had value and we are so terribly sorry.

State Rep. Mary Sawatzky, DFL-Willmar, visited the grounds of the old state hospital cemetery in Willmar last month and read the Legislature’s apology aloud. Willmar started out in 1907 as the state’s first substance abuse treatment center and eventually became known as the Asylum for the Insane.

Over the years, more than 700 people died at Willmar and were buried at nearby Oak Knoll cemetery. Their graves were marked with a metal spike and stamped with a number. Now, the spikes have been pulled. Every identifiable grave has a proper granite marker, inscribed with names and dates.

Sawatzky’s apology was part of the annual remembrance ceremony, one of many similar events that take place around the state every year.

“The state apologizes to all persons with mental illness and developmental and other disabilities who have been wrongfully committed to state institutions,” Sawatzky read. “It regrets this history of institutionalization of persons with those disabilities, [and] it commits itself in their memory to move steadfastly to help Minnesotans with those disabilities, who in the future turn to the state for services, receive them in the least restrictive manner.”

An apology, delivered years after the injury, may not seem like much. But to those who survived state institutions, and the families of those who didn’t, it means a great deal. “It makes me feel good inside,” Lubber said. “But there’s still a lot of work to do.”

© 2013 the Star Tribune (Minneapolis)
Visit the Star Tribune (Minneapolis) at www.startribune.com
Distributed by MCT Information Services

~~~

State not doing enough to keep guns from people with mental health conditions, audit says. Los Angeles Times (10/29) by Patrick McGreevy

SACRAMENTO -- Thousands of mentally ill Californians are not being reported to the state Department of Justice so that they can be considered for a list of those prohibited from possessing firearms, a state audit said Tuesday.

More than 20,000 people have been identified as possessing guns even though they are prohibited from doing so because of criminal records, restraining orders or severe mental illness, and the state is working to clear the backlog by sending agents out to confiscate weapons.

But, the audit said, insufficient effort from the Department of Justice and poor reporting from the state's Superior Courts, which issue orders determining mental illness, have limited the identification of thousands of more people with mental illness.

“This report concludes that the Department of Justice has not sufficiently reached out to Superior Courts or mental health facilities to remind them of firearm prohibition reporting requirements in state law,” State Auditor Elaine Howle wrote to Gov. Jerry Brown.

Auditors surveyed 34 courts that did not appear to be submitting firearm prohibition reports to the Department of Justice’s mental health unit from 2010 through 2012, and learned that most of them were unaware of the reporting requirements. Those courts said they had not reported about 2,300 mental health determinations to the department over the three-year period.

The audit also looked at courts in Los Angeles, San Bernardino and Santa Clara counties and found they filed reports but they were incomplete.

"For example, we found that the Mental Health Courthouse at the Los Angeles Superior Court was unaware of several court determinations it was required to report. Among these were those that determined that individuals were mentally incompetent to stand trial or that an individual is a danger to others," the audit said.

The Justice Department also sometimes made bad decisions about which of the referred mentally ill should be included on the list of persons prohibited from possessing guns, auditors said.

The audit’s findings are “very troubling,” according to Assemblyman Allan R. Mansoor (R-Costa Mesa), who requested the review. He said legislation will be introduced to make the system work.

“After reviewing the report’s findings, it’s clear that the Attorney General’s office must do a better job in coordinating the reporting and processing of this information,” Mansoor said.

Earlier this year, Brown approved $24 million to expedite the confiscation of weapons from people who are on the list, but a large backlog remains, Howle noted.

“However, because Justice uses the information it receives from courts and mental health facilities to identify persons who are prohibited from possessing a firearm, Justice must improve its outreach to these entities and strengthen its management of the information it does receive to ensure it does all it can to protect the public,” Howle wrote to the governor.

Department of Justice officials agreed with most of the auditor’s recommendations for improving reporting and said steps are already being taken.

The state “cannot compel courts to submit mental health determinations,” but will offer training to court personnel and request periodic reports from courts believed to be underreporting the mentally ill, according to Stephen J. Lindley, chief of the Bureau of Firearms from the Department of Justice.

~~~

Correction: Mental Health Database story. Chron (10/29)

Deputies: Teen charged with rape of classmate with a disability. Fox 6 WBRC (10/29)

PHOENIX (AP) — In a story Oct. 27 about Arizona legal groups proposing a mental health database, The Associated Press reported erroneously that the State Bar of Arizona is among the agencies behind the database. The Arizona Criminal Justice Commission is laying the groundwork for the project.

A corrected version of the story is below:

The Arizona Criminal Justice Commission wants a database to keep track of people who are under court-ordered mental health treatment.

The database known as the Mental-Health Registry is under construction and will be managed by the state Supreme Court, according to the Arizona Capitol Times (http://bit.ly/163zbyY).

It will tell police officers whether a person exhibiting possible signs of mental illness is undergoing treatment under the supervision of the court or deemed mentally incompetent by a court.

Proposed legislation also would close gaps in laws that prohibit certain people from possessing a firearm, such as those who are under indictment, under guardianship for mental incapacity or found to be mentally incompetent.

The state currently reports people who have been involuntarily committed to a mental institution to the National Instant Criminal Background Check System, the database used for checking the backgrounds of gun buyers.

However, only about 10 percent of them are reported because of an inadequate digital record-keeping system.

The state doesn't report people who have been determined to be incompetent. Arizona also doesn't report people under felony indictment, mostly because prosecutors aren't set up to enter information into the various criminal databases from which NICS captures data.

The idea behind the legislation and the database is to improve the state's reporting to NICS. The information in the Mental-Health Registry would be transmitted to the Arizona Department of Public Safety crime database and NICS.

"I really believe this is the start of a good solution," said George Diaz, a spokesman for the Criminal Justice Commission.

The legislation is in its preliminary stage and has to be approved by the commission, which meets Nov. 14.

Eddie Sissons, a consultant with Mental Health America of Arizona, said any legislation is going to include a provision for deleting a person whose condition has improved from the mental health database.

Sissons said there has to be a balance reached between public safety and unnecessarily stigmatizing people with mental illness.

James McDougall, a retired judge who specializes in mental health legal issues, is drafting separate legislation that would spell out how the courts use the database.

He said there has been plenty of discussion about Sissons' concerns and establishing a way to get people out of the registry, either through a separate court proceeding or more automatically with a separate order that supersedes the order for treatment.

"Nobody wants this register to fill up with orders that don't need to be enforced," said McDougall, who sits on a State Bar of Arizona panel concerned with mental health law and legal practice.

McDougall said the legislation he's working on is also very preliminary and hasn't been approved by the State Bar.

___

Information from: Arizona Capitol Times, http://www.arizonacapitoltimes.com

~~~

INTERNATIONAL

Remploy factories shut up shop – the end of an era for workers with disabilities. The Guardian (10/29) by David Brindle

The last Remploy factories close on Thursday, ending 67 years of state-run sheltered factory employment for disabled people in the UK. For some, it represents a long overdue progression from paternalist attitudes towards disability and work; for others, an unforgivable betrayal.

Closure of Remploy's remaining three furniture factories in Blackburn, Sheffield and Neath, south Wales, will draw a line under an issue that has riven the disability movement and caused huge difficulties for successive governments. Recriminations are likely to continue for many years, but there will be no return to the concept, part of the welfare state settlement, of a protected workspace for disabled people, operated and subsidised by the taxpayer.

Tim Matthews, Remploy's chief executive, has overseen the final, painful switch from sheltered factories to supporting people with disabilities into mainstream employment – a side of the operation that will continue.

For him, the move has seemed inevitable since the day, four years ago, when he visited Remploy's Birkenhead textile factory, which eventually closed last year.

"For a variety of reasons, they had lost their contracts, and there were 30 or 40 people sitting there doing absolutely nothing," Matthews recalls. "They had no work to do and had not had any work for some time.

"Later, I went down the road to the Birkenhead branch of Remploy Employment Services (Res), which had not been open very long, and learned that they had placed more than 40 people in work in six months. That was quite a contrast: 40 people sitting around doing nothing in our factory against 40 people in productive jobs in the local economy. Which was the right model for supporting disabled people in the 21st century?"

Critics accuse Matthews and Remploy's senior management of having done little to win new business for the factories, which numbered 83 as recently as 2007. Twenty-nine of those were closed the following year under the Labour government – something for which Peter Hain, who was work and pensions secretary and the MP for Neath, in south Wales, continues to be vilified in some quarters.

In 2008, Matthews, a former leading NHS executive, was recruited to try to make a go of the remaining 54 factories, while developing Res, under a modernisation plan that was given £555m of government funding over five years. But the economic recession hit that same year and the rapid move to outsourcing of public-sector services meant that councils, the health service and other government bodies were placing fewer contracts with Remploy – despite exhortations by ministers, notably then prime minister Gordon Brown who was a strong supporter of the organisation.

Matthews thinks it might have been possible to save a core group of factories if he had been allowed to make further closures and refocus product lines. But the issue had become too hot a potato for Labour, which was by then dogged by vociferous protests by Remploy workers .

The coalition government commissioned a report on the future of disability employment and training from a review team led by Liz Sayce, chief executive of disability charity Radar (now Disability Rights UK) and a known critic of sheltered factories. The report recommended winding down support for segregated employment, saying that each of the 2,800 Remploy factory workers was subsidised by an average £25,000 a year that could be better spent.

With that political cover, and following a subsequent consultation, ministers announced in March last year that all subsidies would end and the factories sold or closed.

Of the 54 factories, 36 were deemed unviable and shut in 2012. Of the remaining 18, three have been sold as going concerns. The sale of the successful automotive component division, which accounts for a further three, and of Remploy's CCTV monitoring business is on the verge of completion. New small-scale enterprises owned and run by some of the workers made redundant have sprung up in seven other factories.

In all, about 390 jobs are expected to be saved or created out of 1,200 that remained in December. At their peak, in the late 1980s, Remploy factories employed more than 10,000 people at 94 sites – though they never made a profit.

It is unclear how many ex-Remploy workers have found other jobs. The Department for Work and Pensions says it has contact with 1,300 of the 1,800 people made redundant since March 2012, of whom 535 are back in work and 398 are in training. An £8m support package has been allocated, together with 200 personal case workers.

Matthews leaves Remploy at the end of the year when his contract finishes. A new chief executive will run Res, which has helped 50,000 disabled and disadvantaged people into work in the past four years. By March 2015, it is expected to be in private hands.

Matthews says: "By all measures … the business [Res] is going extremely well."

To some, nothing can replace the support that the sheltered factories offered. Jerry Nelson, national officer for Remploy at the GMB trade union, says: "This is devastating for the people involved, some of the most disadvantaged in society. For many, the factory has been their whole life – and their lives are being destroyed."

~~~

HEALTH

Autism Tied To Weight Gain During Pregnancy. Disability Scoop (10/29) by Shaun Heasley

How much weight a mother gains while pregnant may offer clues about autism, a new study suggests.

Researchers have identified small but significant differences in patterns of weight gain during pregnancy in cases where children were later diagnosed with autism as opposed to pregnancies resulting in typically-developing kids.

However, those behind the new study were quick to emphasize that weight gain itself may not be the cause of autism, but rather that it may be symptomatic of other issues related to the developmental disorder.

“The risk of autism spectrum disorder associated with a modest yet consistent increase in pregnancy weight gain suggests that pregnancy weight gain may serve as an important marker for autism’s underlying gestational etiology,” said Deborah Bilder, an assistant professor of psychiatry at the University of Utah who led the study which was published online this week in the journal Pediatrics.

“These findings suggest that weight gain during pregnancy is not the cause of ASD but rather may reflect an underlying process that it shares with autism spectrum disorders, such as abnormal hormone levels or inflammation,” Bilder said.

For the study, Bilder and her colleagues looked at two different groups of children living in Utah. In one case, researchers compared birth records for 128 kids diagnosed with autism to a control group of 10,920 without the developmental disorder. Then, they compared records for a separate group of 288 kids on the spectrum to those of their 493 unaffected siblings.

Though the differences were small, the researchers found that autism risk was “significantly associated” with weight gain during pregnancy in both groups studied.

Bilder said that no immediate changes are warranted for pregnant mothers.

“Pregnant women should not change their diet based on these results. Rather, this study provides one more piece for the autism puzzle that researchers are exploring,” she said.

***

Original study: here

Article

Maternal Prenatal Weight Gain and Autism Spectrum Disorders

Deborah A. Bilder, MDa, Amanda V. Bakian, PhDa, Joseph Viskochil, MEda, Erin A.S. Clark, MDb, Elizabeth L. Botts, MDa, Ken R. Smith, PhDc, Richard Pimentel, MSCSc, William M. McMahon, MDa, and Hilary Coon, PhDa +

Author Affiliations

Departments of aPsychiatry,

bObstetrics and Gynecology, and

cPopulation Sciences, University of Utah, Salt Lake City, Utah

ABSTRACT

BACKGROUND: The rising population of individuals identified with an autism spectrum disorder (ASD) calls for further investigation of its underlying etiology. A disturbance in the fetal steroid hormone environment may be a mechanism in which environmental and genetic risk factors interact. The mother, fetus, and placenta collectively create the fetal steroid environment. Prepregnancy BMI and pregnancy weight gain have served as markers for fetal steroid hormone exposure in other disease states. This study’s objective is to determine whether prepregnancy BMI and pregnancy weight gain are associated with increased ASD risk across study designs and cohorts while controlling for important confounding variables.

METHODS: A population-based Utah ASD cohort (n = 128) was ascertained in a 3-county surveillance area and gender- and age-matched to 10 920 control subjects. A second, research-based ASD cohort of Utah children (n = 288) and their unaffected siblings (n = 493) were ascertained through participation in an ASD genetics study. Prenatal variables were obtained from birth certificate records.

RESULTS: ASD risk was significantly associated with pregnancy weight gain (adjusted odds ratio = 1.10, 95% confidence interval: 1.03 to 1.17; adjusted odds ratio = 1.17, 95% confidence interval: 1.01 to 1.35 for each 5 pounds of weight gained), but not prepregnancy BMI, in population and research-based cohorts, respectively. When analyses were restricted to ASD cases with normal IQ, these associations remained significant.

CONCLUSIONS: ASD risk associated with a modest yet consistent increase in pregnancy weight gain suggests that pregnancy weight gain may serve as an important marker for autism’s underlying gestational etiology. This justifies an investigation into phenomena that link pregnancy weight gain and ASD independent of prepregnancy BMI.

~~~

EDUCATION

Paul Rabil speaks to Jemicy students about overcoming learning disability. The Baltimore Sun (10/29) by Mike Kingaman

A star lacrosse player turned the world topsy-turvy Tuesday for a group of dyslexic middle schoolers.

"It may be difficult for you guys to understand now, but a learning disability can be a gift," Paul Rabil told a gathering of about 100 students at the Jemicy School in Owings Mills.

Rabil, 27, said his own struggles with auditory processing disorder in the classroom helped him on the athletic field, where he became a three-time first-team All-American midfielder at Johns Hopkins and, now, a standout with the Boston Cannons of Major League Lacrosse.

"I've experienced a lot of the same day-to-day stuff that you guys do and, quite honestly, it has led to the success I've had as a lacrosse player," said Rabil, whose shot has been clocked at 111 mph. "In school, I'd have to do the same assignment over and over again. It wasn't easy, but I graduated from college with a 3.5 grade-point average.

"And I'm convinced that that repetition in the classroom [spilled over] to lacrosse where, in practice, I'd shoot and pass the ball way more than anyone else. That's why the disorder that I was diagnosed with in fifth grade was beneficial."

Rabil's words resonated with his audience at Jemicy, a magnet for college-bound students with langauge-based learning differences.

"What he said made a lot of sense — to never give up and have faith in yourself," said Katie Hormes, 11. "I'll remember everything."

Said Christopher Prigg, 13, "I know now that you can cope with [dyslexia] and make it so far in your career, as an athlete or anything else. Someday, I hope maybe to be like him."

Rabil, who grew up in Gaithersburg and now lives in Canton, heads his own foundation, begun three years ago to help children with dyslexia and related disorders to thrive both academically and athletically. His organization formed a partnership with Jemicy earlier this year and will help raise money for scholarships.

He was accompanied Tuesday by Tony Siragusa, the former Ravens defensive tackle who now broadcasts NFL games for Fox and hosts a home renovation show on cable TV. Siragusa and his crew filmed Rabil's talk at the school for the latter's upcoming appearance on that series, Man Caves, on the DIY Network. The reason?

"Because Paul isn't just about lacrosse," Siragusa said. "This shows a whole other side to him. That he would come here and speak to kids sort of paints a picture of who he is."

No one embraced Rabil's words more heartily than Alex Cashman, 11.

"I loved Paul's speech, how he persevered through his disorder and worked 10 times harder than most other people who don't even know how he feels," she said. "But we know, because we all have the same disorder, and maybe even more.

"I knew where he was going with everything he said, and it's very inspiring that he now plays on the U.S. team. I play lacrosse, and I have to practice, practice, practice too. Everyone here has to work really hard to get where they want to go, but that's OK.

"Everything in life can't be just an easy-peasy breeze."

mike.klingaman@baltsun.com

~~~

SPORTS

World-Renowned Special Olympian Starts New Chapter. Disability Scoop (10/30) by Frank Bodani

YORK, Pa. — They watched the woman old enough to be their grandmother crank out pushups on the gym floor.

She talked to the two dozen teenagers during her sets of pushups, then sit-ups — lecturing, inspiring, urging them to do their best in order for good things to happen.

She led them in laps around the Crispus Attucks Association gym in York’s south side. Then, Loretta Claiborne told them about her life.

By the end of an hour, the most famous Special Olympian had won over even more souls, and this time only a handful of blocks from where she grew up.

She uplifted the single mothers.

She humbled the former football players.

And she politely refused to accept a check to compensate her for her time.

“She makes it so that you can really overcome any obstacle,” said Elvira Torres, 19, part of that “mental toughness” class to improve life skills and job readiness.

Claiborne, who just turned 60, doesn’t drive and lives in a small home and uses Greyhound buses, bikes and her running shoes to get to where she needs to go. In one sense, she could use the money.

In another, it’s the last thing she needs.

“I want to make a difference with our young people. I enjoy it,” she said simply, offering no more.

York’s most unique celebrity continues to push hard past the three-quarters turn in life as an athlete, renowned speaker, world traveler and social activist.

She chattered on the other day, from one topic to another, as she walked out of Crispus Attucks, her workout and personal enrichment headquarters for most of her life.

The warming, early evening sun seemed to beg her on.

She paused for a bit and then took off, running toward the next great possibility.

—

Those teens at Crispus Attucks were like a lot of people who come in contact with her these days.

They had heard of Claiborne and the building named after her and the Disney TV movie about her life. They had glimpsed her steady runs through city streets.

But they had never met her. They didn’t really know her. They had no idea just how her life has flourished more since those national accolades more than a decade ago.

Who is she now? She collects four-leaf clovers and saves money by turning down the heat so low in the winter that she sleeps wearing “couch blankets” and sweatpants.

She also gets financial tips from Olympic gymnast Bart Conner, has traveled with world champion figure skater Michelle Kwan and has been “proposed” to by B.B. King and Warren Buffett — with a snapshot of the billionaire business investor down on one knee to prove it.

She has dined with four U.S. presidents and held court with Nelson Mandela.

Most importantly to her, though, is continuing to lobby for those with intellectual disabilities, like herself. Everything else is just a means to that.

Her latest project involves spreading the reach of Unified Sports to places like York. These programs, created about two decades ago, combine athletes with and without intellectual disabilities on the same teams.

The purpose is to foster friendships, self-esteem and understanding while breaking down the often cruel social order in school.

That would have been Claiborne’s dream growing up when she fundraised to start a girls’ track and field team only to be told she couldn’t participate.

That leads into the well-worn story of how she conquered her beginnings — the first chapter of her life — and how it’s still incredible enough to stand on its own.

She faced discrimination from all angles: A poor, black girl raised by a single mother in a crowded home in the Codorus projects. She was born partially blind and couldn’t walk or talk until she was 4. Officials diagnosed her as “mentally retarded” and recommended she be institutionalized.

Always slow to learn bookwork, she pushed as best she could through special education classes to earn her diploma from William Penn.

She describes growing up feeling like the “weakest of the weak, the castaways, the throwaways of society.”

She was taunted and told she wouldn’t amount to anything and certainly would never be able to give back. It was up to a handful of adults to calm her and believe in her then, often encouraging her to run.

Most important was her mother, that large, bold woman who ruled an immaculate home with the force of Moses on the Mount. She made her children call her, “Rita,” and she was the toughest on whom everyone assumed was the weakest.

Don’t hang the socks the right way to dry on the clothesline? Rita Claiborne demanded answers and funneled her force at the one who could barely speak.

If the world would be damning to her little girl, then Rita needed to make her tough enough to survive it and succeed. It was as if she knew sending Loretta door-to-door to ask for extra rolls of toilet paper would force her to witness the giving of others.

This forged in her an “enduring, deep balance of toughness and tenderness,” said Tim Shriver, chairman of Special Olympics. “Strong enough to protect herself but vulnerable enough to understand. That’s one hell of a powerful combination.”

It all led to a defining moment about a decade later in 1981.

After a race near Pittsburgh, Special Olympics officials propositioned her to speak on their behalf for a fundraising contest. A big food company would be handing out an even bigger check to the charity of its choice.

“I don’t talk,” she said.

But they pushed and a close friend prodded and she ended up at the presentation in a new dress, everything about the moment awkward and ill-fitting.

“I had no paper in my hand, no nothing. I was nervous.”

But she wowed the panel anyway with an impromptu speech about what Special Olympics meant to her.

She won that donation, and it was as if doors suddenly began opening and really haven’t stopped since.

“I never had any training, it’s just a gift,” she said of her public speaking.

That gift piggybacked her extraordinary athletic ability — she ran 26 marathons and was honored by Runner’s World Magazine — that culminated in her earning ESPN’s Arthur Ashe award for courage in 1996. She was introduced by Denzel Washington and nailed her acceptance speech in front of the black ties and evening dresses.

Even that, though, was more like another beginning.

To understand, talk to Shriver. He met Claiborne decades ago as she was growing into the ultimate success story of Special Olympics, the organization founded by his mother, Eunice Kennedy Shriver.

Claiborne won herself into the hearts of Tim Shriver’s wife and kids and influenced him with her practicality and ability to treat everyone, no matter what stature, with a perplexing equality.

There was the time she “snapped” him to attention as he stressed over preparations for a gubernatorial appearance. She picked the perfect moment for what has now become her most popular truism: “You know, Tim, the governor puts his pants on the same way you do every morning.”

Shriver still marvels at her insight and timing 20 years later, like when she challenged the Yale Alumni Association to become more involved in Special Olympics.

Her message was, “You all live in one world, and I live in another, and you should consider coming into my world.”

“That was exactly the wrong message, yet exactly the right message to all of those straight suits,” Shriver said. “It was, ‘You need to get these people into our world, where everybody counts and effort is rewarded and there are no barriers.’”

A few years ago, she eulogized Shriver’s mother and even sang in front of the media cameras and the pews packed with the likes of Vice President Joe Biden, Oprah Winfrey, Stevie Wonder and Arnold Schwarzenegger.

She spoke simply yet eloquently, her words carrying just the right weight.

When Tim Shriver first met Claiborne, “everything was running and talking about running and she reached these extraordinary heights — and then she quickly pivoted. She worked on social service issues and helping her community and volunteering … and then she pivoted again.”

Now, she is spreading the word of Special Olympics around the world, from speeches in Panama and Korea to helping build new programs in Africa and India.

She moves confidently and smoothly among cultures, languages and religions. She knows sign language, some Arabic and taught herself Russian by listening to tapes on her Sony Walkman while doing house chores. She has become a beloved member of one family of friends after another, “Aunt Loretta” giving advice to kids, harvesting maple syrup, running country roads and still winning gold medals playing golf and tennis.

She learned to swim, then ice skate as an adult. She is a fourth-degree black belt in karate.

But how would she know, when talking to a group of kindergartners, that she should sit on the floor to better relate on their level? She just knew.

“I think in older cultures,” Tim Shriver said, “they would have made a seat for her in the center of the village, and people would have come and asked her for advice.”

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She is striking contrasts of fame and anonymity, of sweetness and sharp edges.

Women fussed over her during a recent Zumba class appearance, but she also walks to the neighborhood Turkey Hill each day and to the Central Market each week to sip tea with old friends, without any notice.

It’s the strangest of things.

She is a thrift store shopper who survives on disability checks, odd jobs and the honorariums she does accept. Even the Disney movie only earned her enough to buy a fixer-upper in the city.

And yet she is good friends with actress Susan Saint James, who attended her 60th birthday party. She has testified before the U.S. Senate. She once got a get-well phone call from Superman, Christopher Reeve.

Just recently she became possibly the first person with an intellectual disability to address world leaders at the United Nations.

“I am here today to represent 200 million people worldwide … You may not see my disability, and that is part of the challenge … I am here before you to ask you to SEE ME. Recognize me, and those like me, when goals and strategies are set. See not our disability, but what we can contribute if we have access to basic services.”

Speaking in grand forums is one thing, but her links to celebrities is quite another, though she cares little for the attention.

She doesn’t offer the stories. Rather, they spill out over homemade pizza and soda and hours of conversation in the living room of close friends Bob and Becky Hollis.

There’s the one about meeting King, the legendary blues guitarist, at the White House a decade ago. He fawned over her at dinner and then expressed his interest in front of George W. Bush.

There also was lunch a couple of years ago with Buffett in Nebraska. The short PR appearance turned into a nearly two-hour, back-and-forth, storytelling session between two people who couldn’t appear more different and yet bonded over their frugality.

And there was the time in an airport when she handed her phone to Kwan, who proceeded to rattle on a mile a minute about Claiborne to star-struck friend Becky Hollis.

“I think (celebrities) can be just ordinary people when they’re with Loretta,” Hollis said.

Better yet, maybe this is the reason why most everyone seems attracted: She is so genuine, grounded and straightforward that the “natural good in her” always rushes to the surface.

Plus, at the time when many retire and begin to slow, it’s as if she burns to spread the message of her life to anyone who can use it, smoothly shifting to fit her audience and surroundings.

Nora Mason has seen it for years and still sounds awed describing it. She met Claiborne through Pennsylvania Special Olympics and now helps arrange many of her speaking engagements and appearances.

She spoke of Claiborne captivating several hundred during a presentation at IBM (“She had the entire room standing up and chanting back to her. They would have done anything Loretta asked them to do”) and how “fired up” she got recently when she challenged Utah students to embrace Unified Sports.

“I think she knows now how she can have such an impact,” Mason said. “Maybe 10 years ago, I think she just did it, just worked her magic. But now she realizes more the impact she has, that gets her excited. Maybe she wants to slow down, but that keeps her going.”

Through it all, evenings like this one speak truest:

She walked to Farquhar Park alone carrying her tennis racket and a bag of balls and a bottle of watered-down Gatorade. She hoped to find a pickup partner to hit with.

It was 93 degrees but felt like 98 with the humidity.

Finally, she ended up playing with a man half her age, who knew her only as a tennis novice like himself.

They rolled through 35 games in the swelter and she never stopped smiling and talking. After that, another partner showed up and they hit around until it became too dark to see.

All the while, Claiborne looks at least 15 years younger than she is, almost as if age hasn’t caught her because she never slows down long enough to let it.

She’s always busy with something, from collecting school supplies for an overseas mission to knitting for some charity to phone meetings as an executive committee member of Special Olympics International.

“Just one of the people who changes your whole life when you meet her,” said Phyllis Seelig, Claiborne’s tennis coach in Special Olympics.

“I have a doctoral degree and I look at her like, ‘Am I doing everything with my God-given talents?” said Linda Meyer, a college professor who met her through Special Olympics. “That’s what I learned from Loretta: Whatever I want to do, I can do. Whatever Loretta wants to do, she accomplishes.”

Whereas running used to be Claiborne’s release, now it is more her therapy, her time to formulate upcoming speeches and presentations, as many as four or five a month. She rarely uses notes.

She crafts impeccable 16-point stars out of parchment paper and paraffin. And she beams over her collection of four- and even five-leaf clovers she picks and presses in her Bible, then proudly gives away to friends.

That she finds these rare clovers in city parks just sounds like something she would do.

One more extraordinary detail most wouldn’t know about.

“I’m just good at looking for them,” she said. “I try to prove to people that it’s not impossible. It just takes patience.”

© 2013 York Daily Record (York, Pa.)
Visit York Daily Record (York, Pa.) at www.ydr.com
Distributed by MCT Information Services

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TRANSPORTATION

Sen. McCain questions TSA on treatment of passengers with disabilities. The Hill (10/29) by Keith Laing

Sen. John McCain (R-Ariz.) is questioning the Transportation Security Administration on its treatment of disabled passengers at the Phoenix Sky Harbor International Airport.
Seizing on recent reports in The Arizona Republic about disabled passengers in Phoenix allegedly being singled out for increased security screening, McCain demanded answers from TSA Administrator John Pistole.
"The Arizona Republic recently reported on an 'intolerable situation' where many passengers with disabilities at Sky Harbor International Airport in Phoenix, Arizona have complained of 'invasive' searches by the Transportation Security Administration," McCain wrote. 
"At Sky Harbor, passengers with disabilities are filing formal complaints about TSA procedures at a rate of more than two and a half times the national average," the long-time Arizona senator continued. "I write to ask you to explain the alleged wrongful actions of TSA personnel at Sky Harbor and review TSA’s screening policies for passengers with disabilities to ensure that security protocols meet contemporary threats and respect the dignity of travelers."

McCain cited examples of the TSA's alleged mistreatment of disabled passengers at the Phoenix airport.

"In June, an 82-year-old wheelchair-bound woman reportedly went through the security line at Sky Harbor to board a flight to London and set off a metal detector," he wrote. "She apparently explained to the TSA agent on duty that she had survived a battle with breast cancer and, as a result, had a prosthesis.  

"Ignoring her explanation, however, TSA agents reportedly brought the elderly woman to a back room where they ordered her to remove her blouse, bra, and prosthesis for examination," McCain continued. "Only after this search — which her granddaughter described as 'degrading' and 'invasive' — was she allowed to finally board her flight." 

McCain said the TSA needs to provide an explanation for the allegations that have been lodged against its workers in Phoenix. 

"It is unfortunate that TSA subjects seniors, wounded veterans and passengers with special medical needs to excessive searches," he wrote. "I am sure you would agree that no 82 year-old woman should ever have go through such a process in order to board an airplane.  Of course, TSA has to strike a balance between privacy and security, but in the case of passengers with disabilities, that common-sense balance seems to be eluding TSA’s screeners at Sky Harbor."

TSA officials defended the searches.

“The Transportation Security Administration (TSA) strives to treat every passenger with dignity and respect. During the screening process, if an anomaly is detected, secondary screening is required to ensure the passenger does not have threat items, such as explosives concealed under clothing. A passenger should not be asked to remove or lift any article of clothing to reveal a sensitive body area or to remove a prosthetic," the agency said in a statement to The Hill.
“TSA works with numerous groups including breast cancer organizations to continuously refine and enhance our procedures to improve the passenger experience while also ensuring the safety of the traveling public.”

— This post was updated at 5:15 p.m.

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American Association of People with Disabilities
2013 H Street NW, 5th Floor

Washington, DC 20006 United States

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